Norah Fry Research Centre, University of Bristol, Bristol, UK.
J Appl Res Intellect Disabil. 2014 Jan;27(1):76-84. doi: 10.1111/jar.12085. Epub 2013 Nov 21.
While inclusive research has become an important stream in research with people with intellectual disabilities, there is a tension between the possibly empowering research process and the strength of the research itself to make social change happen. In this paper, we explore the contribution of two inclusive qualitative research studies in Australia and the Republic of Ireland to change in policy and legislation.
Both studies used qualitative methods including life stories and focus groups to explore the issue of sexuality and relationships. In both studies, people with intellectual disabilities were actively involved in undertaking the research.
Both studies revealed that it was difficult for people with intellectual disabilities to express their sexuality openly or to form adult relationships.
Both studies were used by people with intellectual disabilities and their supporters to promote change in which they had a heard voice. This paper is about how people with intellectual disabilities and their supporters can use research which they have done to change policies and laws that affect them. When people with intellectual disabilities are doing research it is called inclusive research.We write about two research studies which were about the sexual lives and relationships of people with intellectual disabilities. One research study was in Australia and one was in the Republic of Ireland.In the Australian study, Living Safer Sexual Lives, 25 people with intellectual disabilities told their life stories and talked about sexuality and relationships.In the Irish study people with intellectual disabilities told life stories and talked with other people with intellectual disabilities about their sexuality and relationships in groups. These are called focus groups.In this paper we explore 4 questions that arose from these studies. Question 1. What impact does doing research have on the people who are involved in it? People with intellectual disabilities in Australia were members of the group that guided the research. They were partners in its design, in deciding what questions should be asked about sexuality and relationships., and thinking about what was found out. They became involved in making films about the study. They learned a lot about research, sexuality and relationships and became members of a government committee to change policy about sexuality and people with disabilities. In Ireland people with intellectual disabilities involved in doing the research talked together about their lives. They then talked with 16 groups of people with intellectual disabilities about their relationships and sexuality. They learned about research and about sexuality and developed plays about their experiences. Question 2. To what extent can inclusive research change policy and practice? In Australia the research led to a change in government policy about sexuality and people with disabilities. The new policy clearly stated people with disabilities had rights to relationships and to a sexual life. It set out rights and responsibilities for people with intellectual disabilities and service providers about relationships and sexuality. It took a long time to get a change in policy and people with intellectual disabilities were part of the getting the change to happen. In Ireland there is a law which says that it is illegal to have some forms of sex with people with intellectual disabilities. From the research people with intellectual disabilities became involved in talking with government about changing this law so that it gives them more rights to a sexual life. The law has not changed yet but the voices of people with intellectual disabilities are now being heard. Question 3 When does research shift into being advocacy? How does this happen? People with intellectual disabilities in both studies became advocates to get change to happen. Partly this was because they had become more 'expert' about sexuality and relationships and the policy and law. They were angry at what they had found out in the research and wanted to get change to happen. Question 4 What added value does including people with intellectual disabilities as researchers give to the research? People with intellectual disabilities had knowledge and experience that made it possible for the research in both Australia and Ireland to happen. They were important in how the research was done and what was done with it after it was finished.
尽管包容性研究已成为研究智障人士的重要领域，但在可能增强研究过程的力量和研究本身推动社会变革的力量之间存在紧张关系。在本文中，我们探讨了澳大利亚和爱尔兰共和国的两项包容性定性研究对政策和立法变革的贡献。
这两项研究都使用了定性方法，包括生活故事和焦点小组，来探讨性和关系问题。在这两项研究中，智障人士都积极参与了研究。
两项研究都表明，智障人士很难公开表达他们的性行为或形成成人关系。
两项研究都被智障人士及其支持者用来推动变革，使他们有机会发出自己的声音。本文介绍了智障人士及其支持者如何利用他们所做的研究来改变影响他们的政策和法律。当智障人士进行研究时，这被称为包容性研究。我们写了两篇关于智障人士性生活和人际关系的研究报告。一项研究是在澳大利亚进行的，另一项是在爱尔兰共和国进行的。在澳大利亚的研究中，《更安全的性生活》中，25 名智障人士讲述了他们的生活故事，并谈论了性和关系。在爱尔兰的研究中，智障人士讲述了他们的生活故事，并在小组中与其他智障人士讨论了他们的性和关系。这些被称为焦点小组。在本文中，我们探讨了这两项研究提出的 4 个问题。问题 1. 做研究对参与研究的人有什么影响？澳大利亚的智障人士是指导研究的小组的成员。他们是研究设计、决定应该询问哪些关于性和关系的问题、以及思考发现的合作伙伴。他们参与了关于这项研究的电影制作。他们学到了很多关于研究、性和关系的知识，并成为了一个政府委员会的成员，该委员会负责改变关于性和残疾人士的政策。在爱尔兰，参与研究的智障人士一起讨论他们的生活。然后，他们与 16 组智障人士讨论了他们的关系和性。他们了解了研究和性，并创作了关于他们经历的戏剧。问题 2. 包容性研究在多大程度上可以改变政策和实践？在澳大利亚，研究导致了政府对性和残疾人士政策的改变。新政策明确规定，残疾人士有权拥有性关系和性生活。它为智障人士和服务提供者设定了关于关系和性的权利和责任。改变政策需要很长时间，而智障人士是推动变革的一部分。在爱尔兰，有一项法律规定，与智障人士发生某些形式的性行为是违法的。从研究中，智障人士参与了与政府的对话，以改变这项法律，使他们有更多的性生活权利。这项法律尚未修改，但智障人士的声音现在已经被听到了。问题 3. 研究何时转变为倡导？这是如何发生的？两项研究中的智障人士都成为了倡导者，以推动变革。部分原因是他们在性和关系以及政策和法律方面变得更加“专业”。他们对研究中发现的情况感到愤怒，并希望推动变革。问题 4. 将智障人士纳入研究人员对研究有什么额外的价值？智障人士拥有使澳大利亚和爱尔兰的研究得以进行的知识和经验。他们在研究的进行方式和研究完成后的处理方式方面都很重要。
